Views on organ donation: recipients

All of the recipients we interviewed had benefited enormously from receiving an organ or organs, usually from a deceased (cadaveric) donor. All of them were very grateful to their donor and donor family and said their lives had been transformed by 'the gift' they’d been given. Their own families could also enjoy spending quality time with them now they were better.

Cheryl is a volunteer for the Transplant Support Network. She is divorced and has an adult daughter. Ethnic background / nationality' White British.

In my eyes, it [organ donation] would be the best choice they will ever make in their lives. It doesn’t cost them anything, and it takes two minutes. It helps; it helps someone like me have a full life for whatever time I’ve got left, have a full life to be with my family. To see my daughter grow up. To do everything I’ve ever wanted to do. Without these organs, I wouldn’t be here today. So please think seriously about it. It won’t hurt you, it won’t damage you. It will give someone else that gift of life.

You’re leaving, you’re giving someone else the chance to live and live a normal life. And surely it’s got to give them food for thought. I’m a donor. I’ve gone back on the list. I’m a donor myself.

I would seriously think about it, think about if anyone in their family needed an organ, what would they do? Because that’s what every family fears, and it’s true. And it’s like I say again, please please, please, don’t take your organs to heaven, because heaven knows we need them here desperately.

Recipients had urged their friends and family to register and carry a donor card. They’d also registered themselves and many said they’d be happy to donate organs and tissue. Others spoke about the importance of families talking about organ donation and knowing one another’s wishes. Some felt that those who were unsure about organ donation should visit patients on dialysis as well as transplant patients. This way they could see for themselves the benefits of organ donation.

Chris is a married picture framer and driving instructor. He has two adult children. Ethnic background / nationality' White British.

I think donation should be a family thing, and it is. So the card should probably carry the signatures of the donor and immediate family. And it’s a process that, and I know that sometimes donors are, they do it independently. And they say, “Oh well that’s what I’m going to do.” And maybe family offer opposition but I’m guessing, in most cases, that it’s a joint decision.

The problem is that, when faced with releasing the organs, it’s an extremely difficult period you know, time. It’s within hours the question is asked, and it’s the wrong time to ask. And a lot refuse, completely understandably so.

Yes. So you think when people register they,

Yeah, almost, I know it’s silly because you register when you’re fit and healthy, and it’s something that might never occur. But almost the question should be asked by the doctors then. And if it happens in a week’s time or ten year’s time or whatever, then, but it’s difficult. But that’s when the question should be asked.

And you feel that there should perhaps be forms that are signed by the person who wants to donate as well as their family, in case they’re not aware of their wishes, or,

Yes. I believe there may be some sort of, yes, that’s the decision, is a joint decision. It’s not down to the individual, the actual donor. Those involved and once the donor becomes a donor they’re not here anymore and everything is put onto the shoulders of parents, sisters, brothers, uncles whatever. So, in a way, those around the donor have a bigger say and that starts when the decision is made to become a donor.

Some of the people we spoke to noted how one donor could save the lives of several patients and also that many transplant patients now live much longer than in the past. Several people mentioned that, while people may be in favour of organ donation, few actually get around to registering. They were keen to raise awareness of organ donation and some had been interviewed on TV, radio and for newspapers. Several had set up their own websites. Many of those we talked to felt it was important for schools to teach children about organ donation as they were ‘the organ donors of the future’.

At the end of the day, it’s down to the individual. As I said, the only thing I could say is go to a transplant clinic, see the people sitting there who are healthy, well. I don’t really think there’s anybody who would say, “God, I wish I hadn’t had that done.” You might at times think, “Oh this is difficult,” if you’re having a bad time with it.

But, on the whole, it’s such a positive thing to do, and I’m sure even donors’ families, although it’s the most heartbreaking decision to make, I’m sure deep down they are delighted that their relative did that. And I mean especially if you think about children who’ve received you know, like a donor of some sort, it’s just amazing that you can make such a difference to their lives, or to anybody’s life.

But I don’t think there’s anybody who, again that’s difficult if it was a child that’s going to donate, but I just think it’s the best gift you can give. And if, yes, if you’ve got reservations then obviously go and talk to a professional who will hopefully ease those worries you’ve got. And give you the right information, because there’s so many bizarre things going around about transplants and you need the facts, you don’t need the fiction that’s made up from it. But if you go to any transplant centre, they have in their clinics loads of leaflets, but no, get the right information

Deepak and Hardev urged people across religious boundaries to think about organ donation. Deepak said clerics of all denominations had failed to find anything in the scriptures that opposed it, and encouraged others to find out more for themselves.

Deepak is a self-employed management consultant. He is married and has two adult children. Ethnic background / nationality' South Asian.

There has again been a fair amount of research done. There was a conference a few years ago that I was involved in which looked at the inter-faith perspective on organ donation. It should be available on the web actually. It was a whole report that was up in Bradford, the conference and all the different religions, Jewish, Buddhists, Zoroastrian. We had all different leaders giving their perspective.

Now that’s research material. They have gone through the religious books and they have studied it, and they are making these recommendations. So I would encourage you know, the NHS has also created leaflets of other faiths, a faith’s perspective on organ donation. Which are available in some of the hospitals, especially where there are large faith-based communities. And get a hold of those. They’re fairly basic but it gives you a good starting point. And then of course find out for yourself, resolve within yourself.

But I would encourage you, in my understanding, in my fifteen years of being in this area, number 1 most people don’t mind giving of their organs. Yes because of religious reasons, other reasons perhaps 10 to 15% of the population might object to it. But don’t let that stop you from registering because story after story can be told of people who have unfortunately passed away. And one of the biggest legacies they have left behind is that they’re signing the organ donor has allowed people like me and many others, up to seven people, who might benefit from an organ, whether it be a heart, whether it be a cornea, a kidney etcetera.

So it’s probably the biggest legacy we can leave behind. And, as one campaign said a few years ago when I was involved with National Transplant Week, ‘Don’t take your organs to Heaven, Heaven knows we need them down here’. And I think that really captures whatever religion, faith, background you are, that captures the essence of why we’re doing this.

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Age at interview:

71

Sex:

Male

Background:

Hardev is married and has two adult daughters. He is a retired teacher (head of mathematics) and now does a lot of voluntary work in prisons and Sikh temples. Ethnic background / nationality' British Indian.

Actually the teaching of the religions is to help people in distress, in pain and suffering. So we shouldn’t use or hide behind religion just to, you know, if you’re so cowardly and trying to hide yourself behind the religion, that’s not right. I wouldn’t accept that sort of argument.
Yes. So there’s no religious basis?

Religion says you help. You help people. You should, with people who are suffering, you should help them. You see there are so many charities going out into the world helping people and giving them food and all sorts of things. So this is something similar. You are saving a life. So you shouldn’t hesitate if you have anybody, a relative, friend or whatever.

Some of the people we talked to praised the organ donation system in Spain, a very successful system, because many people there consented to organ donation on the death of a relative. Recipients also discussed the presumed consent organ donation scheme, where organs are taken unless the donor has specifically opted out in writing. They felt this could increase donation rates, and research suggests it could do by up to 25 per cent. In the current ‘opt-in’ system of organ donation in England, Scotland and Northern Ireland individuals are asked to register their willingness to be a donor after their death.

Most of the recipients we talked to were in favour of presumed consent as they felt it would mean more organs would be available and more lives could be saved. A few, though, felt that organs should be donated consciously and freely as a gift. Several felt that education and more training for doctors and nurses would also help raise awareness of organ donation and help increase donation rates.

Celia is a full time mother and housewife. She has two adult children. Ethnic background / nationality' South Asian.

My husband wouldn’t be here doing the things that he’s doing if we hadn’t had that transplant. I’m on the transplant list and I would say sign up. And I’m hoping the government go in for the opt-out, which means everybody has to be on the register unless they choose not to. Because most people just never get round to it. So isn’t it better they never get round to saying, “No, don’t transplant my organs.” And help lots of people, rather than never get round to helping anybody. And we have thousands of people waiting.

And with kidney disease you can wait because there is dialysis or artificial kidneys. If someone’s got liver failure, they’ve got just a matter of weeks. If someone’s got heart failure, again it’s just a matter of weeks or months, it’s not very long. So the more people we can help, the better life will be for them, and therefore for others.

And actually for the NHS, if people are worried about funding, it’s more expensive to have somebody on dialysis with kidney failure than it is to give them a transplant. So why are we wasting NHS valuable resources? So just get on and register and do it is what I would say.